Still Confused?

[CCINJERSEY]

Hi All,

I don't know why, but I am not processing the difference between ALS and PLS? Some info I have read states that PLS is very rare and hard to diagnose? is it?

If you get a diagnosis of MND is it automatically ALS, then you have to wait to see if it is PLS over time. Or is it the opposite, you start out with PLS waiting to see if you have ALS? Or is all MND considered ALS?

I do understand that PLS is a much slower progression. What type of test would determine PLS vs. ALS?

My friend was diagnosised with MND. But when we asked the doctor if it was ALS he would not say for sure? he said it was predominant Upper Motor Neuron with some irratation to Lower Motor Neuron. This was confirmed from the EMG. He did say this was not 'a typical' of ALS. When I asked him what does that mean? He said he has to watch how illness progresses.

Does this make sense to anyone? If so, could someone explain it to me. I am so frustrated and feeling confused and a little stupid honestly.

Thanks
CC

 

[old dog]

It is my understanding that an EMG is the definitive test. In PLS, only the upper motor neurons are affected. It's very confusing, because the legs may be the first thing to go. The simplified explanation that I was given is that my legs would still work perfectly if the muscles were getting the correct message. I think PLS patients may experience more spasticity but less atrophy than ALS patients.

As Johnny liverpool says, "PLS is so rare it might not even exist." Who knows, it may be a slightly slower progressing form of ALS.

 

[sadiemae]

UMD only is what makes it PLS. UMD and LMD Together is what makes it ALS. Some doctors even classify ALS as UMD Dominant, which usually means a slower progression, and a life expectancy of 7-12 yrs. Or LMD Dominant, which I do not know the life spam. ALS is 3-5 yrs, PLS is not given a life span, as it is not considered terminal. LMN Dominant ALS is where breathing is affected more severely. Some doctors will classifiy PLS as ALS, some refuse to dou so. Us your friend a Veteran?

 

[Polar]

First I've heard of PLS.. Does a muscle biopsy rule out PLS out? I was Diag. ALS 2007 (although symptoms started 2-3 years before that) and I still walk, drive, and do things that don't require lifting or long walks or getting up or stair climbing anywhere that does not have something to pull myself up with.

 

[Tokahfang]

It's easy to be confused - different neuros have different philosophies of PLS. Some treat it as a worse version of HSP, some as a less bad version of ALS, some write it up as a subtype of ALS. Then to compound it, the different PLS communities that exist are similarly fractured - odds are, if you were diagnosed at an ALS clinic you'll end up somewhere like here, but if by a neuromuscular doc more often at the spastic paraplegia foundation section of things.

The sure this is that PLS is upper motor neuron only, so you can be spastic, lose strength, even become paralyzed, but the only atrophy will be from lack of use. It is very slow generally. Rather than the disease itself killing you, you tend to die to normal things - accident, other disease, old age.

 

[CCINJERSEY]

Hi All

Yes that is what the doctor said UMD dominant. Thanks for clarifying! No Sadiemae, she she is not a Veteran, does that have some kind of effect on this illness?
CC

 

[sadiemae]

Veterans just get a lot of monetary support. With UMD dominant the progression is slower(Usually) and we were told a life span of 7 to 12 yrs. My husband is 5 yrs in, and breathing has remained at a constant. However he is unable to walk, or even stand by himself.

 

[notme]

UMN dominant is good as far as progression goes. She will be watched closely to be sure she develops no LMN issues.

 

[Nancynurse]

A good website that explains PLS in easy to understand language is in the Spastic Paraplegia Foundation website. The mayo clinic also has good information in there web site

 

[CCINJERSEY]

THANK YOU ALL FOR INFO - very helpful!
CC